Mop up chemo experiences

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NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Wed Aug 01, 2018 11:31 pm

Caat55 wrote:So I ended up with a trip to the hospital yesterday, woke up okay but as I was leaving for work didn't feel right, achy and stomach sore. Sat down on sofa for a while and woke up a half hour later burning up. Fever was 100.5 and quickly up to 102. Oncologist sent me to get blood work, UA and Chest xray. WBC was up but that's about it, as a precaution they put me on antibiotics. Fever hit 103 last night, now it is normal. My abdomen is still tender but otherwise I am okay.
If it's not one thing it's another.

Susan


I think that it’s better to be safe than sorry when it comes to chemo.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

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susie0915
Posts: 872
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Mop up chemo experiences

Postby susie0915 » Thu Aug 02, 2018 7:53 am

It's scary because since cancer we are so in tuned with our bodies, and every twinge makes us worry. Before cancer, those twinges would be noticed and brushed aside unless it got worse. I'm glad you went to the hospital and got checked and everything is okay. I am over 2 years from finishing treatment and still worry about the little things. Hoping it will get better as time goes by.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6

Caat55
Posts: 543
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Thu Aug 02, 2018 10:01 am

susie0915 wrote:It's scary because since cancer we are so in tuned with our bodies, and every twinge makes us worry. Before cancer, those twinges would be noticed and brushed aside unless it got worse. I'm glad you went to the hospital and got checked and everything is okay. I am over 2 years from finishing treatment and still worry about the little things. Hoping it will get better as time goes by.

That is the truth. My belly was sore so I started to worry about a blockage, almost PM you to ask about symptoms. Health is never taken for granted anymore. My fever came back yesterday afternoon, by evening it was back to menopausal hot flashes, this am I feel fine.
Crazy, thanks Susie and Mike.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Mop up chemo experiences

Postby Shana » Sun Aug 05, 2018 12:10 pm

Glad to hear that you're feeling better. I react to anything unusual now too, things that I would ignore before get scrutinized and researched. If output is a lot I worry about dehydration, if it's too little I worry about blockage... it's enough to drive one bonkers!

Take care and keep on feeling better. It's good that you got checked out just to be safe!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

Caat55
Posts: 543
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Mon Aug 06, 2018 6:19 pm

First CEA after chemo. It is .5. Yippee
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Mop up chemo experiences

Postby Shana » Wed Aug 08, 2018 12:42 am

Caat55 wrote:First CEA after chemo. It is .5. Yippee


Congrats! That's awesome and so low!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

Caat55
Posts: 543
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Wed Aug 08, 2018 9:53 am

Shana wrote:
Caat55 wrote:First CEA after chemo. It is .5. Yippee


Congrats! That's awesome and so low!


It is but I was rereading medical summaries and found a comment that my CEA was negative. Don't know what that means? Is my tumor not show CEA markers?

I saw surgeon yesterday about possible rectal prolapse that my ob/gym noted. He said it was a partial musousal fold prolapse. This is new sense radiation, surgery. He said tissue are too fragile right now for any surgery, recommended putting off barium enema for at least two months to heal skin. Nice guy, direct and clear. He basically told me what I knew myself but needed medical reassurance.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Mop up chemo experiences

Postby Shana » Wed Aug 08, 2018 6:08 pm

Caat55 wrote:
Shana wrote:
Caat55 wrote:First CEA after chemo. It is .5. Yippee


Congrats! That's awesome and so low!


It is but I was rereading medical summaries and found a comment that my CEA was negative. Don't know what that means? Is my tumor not show CEA markers?

I saw surgeon yesterday about possible rectal prolapse that my ob/gym noted. He said it was a partial musousal fold prolapse. This is new sense radiation, surgery. He said tissue are too fragile right now for any surgery, recommended putting off barium enema for at least two months to heal skin. Nice guy, direct and clear. He basically told me what I knew myself but needed medical reassurance.
S


Glad you got some clear answers on your fragile tissues. I have such empathy for you when I try to even imagine how it must feel! I though .5 was ideal, maybe CEA negative means that it's normal, as in negative for concern? Can you message your doctor and ask for clarification?

By the way, I have switched to Stanford, are you still being seen there?
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

Caat55
Posts: 543
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Tue Sep 04, 2018 1:03 am

My feet feel weird, tingly. Is this normal? Feels almost painful but more just uncomfortable.

Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Tue Sep 04, 2018 11:11 am

Caat55 wrote:My feet feel weird, tingly. Is this normal? Feels almost painful but more just uncomfortable.

Susan


Yup. For me it’s in the toes and a bit in the pads just below them. It got stronger after chemo ended. No signs of it going away yet.
Last edited by NHMike on Tue Sep 04, 2018 12:05 pm, edited 1 time in total.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Caat55
Posts: 543
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Tue Sep 04, 2018 12:00 pm

NHMike wrote:
Caat55 wrote:My feet feel weird, tingly. Is this normal? Feels almost painful but more just uncomfortable.

Susan


Yup. For me it’s in the toes and a bit in the pads just below them. It got stronger after chemo ended. Ni signs of it going away yet.

Do you still have clumsy fingers? I write a lot of reports,find I am doing more correcting .
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Tue Sep 04, 2018 12:11 pm

Caat55 wrote:
NHMike wrote:
Caat55 wrote:My feet feel weird, tingly. Is this normal? Feels almost painful but more just uncomfortable.

Susan


Yup. For me it’s in the toes and a bit in the pads just below them. It got stronger after chemo ended. Ni signs of it going away yet.

Do you still have clumsy fingers? I write a lot of reports,find I am doing more correcting .
S


I wouldn't call them clumsy - more of being somewhat dull - that is they have less sensation than they used to. My guess is that it's the stage lower than feeling tingly. I don't have trouble typing, likely because it's just the fingertips. If things went down a knuckle, it would probably be different. I also have really strong fingers, probably from weightlifting, and tennis on the right hand. I am hoping that running will help with the toes - in that using things a lot will result in better circulation and the body clearing the compound that causes neuropathy. The compound was identified last year and I hope that there will be some efforts in finding a way to stop its effects.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

User avatar
susie0915
Posts: 872
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Mop up chemo experiences

Postby susie0915 » Tue Sep 04, 2018 12:49 pm

Caat55 wrote:My feet feel weird, tingly. Is this normal? Feels almost painful but more just uncomfortable.

Susan

Yep. Mine started about a month after chemo was done. It isn't painful but annoying. My hands are better, I don't drop things like a used to. Mostly just my feet now. Tingly and a little numb, no pain. I wear something on my feet always especially on hard surfaces. It has been over 2 years for me, I am just accepting this is how it will be. It has not stopped me from doing anything, I run and exercise fine. Once in awhile my foot can drag, kind of weird. I tried acupuncture, and currently trying reflexology, which is a foot massage. I dont know if it will help but sure feels good.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6

Caat55
Posts: 543
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Tue Sep 04, 2018 6:06 pm

susie0915 wrote:
Caat55 wrote:My feet feel weird, tingly. Is this normal? Feels almost painful but more just uncomfortable.

Susan

Yep. Mine started about a month after chemo was done. It isn't painful but annoying. My hands are better, I don't drop things like a used to. Mostly just my feet now. Tingly and a little numb, no pain. I wear something on my feet always especially on hard surfaces. It has been over 2 years for me, I am just accepting this is how it will be. It has not stopped me from doing anything, I run and exercise fine. Once in awhile my foot can drag, kind of weird. I tried acupuncture, and currently trying reflexology, which is a foot massage. I dont know if it will help but sure feels good.


Thanks for the feedback. I told my husband it felt like a had a leave or something in my shoes. I also avoid being barefoot now. I am interested in how the reflexology works for you. I had hope chemo surprises were finished.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

Soccermom2boys
Posts: 196
Joined: Tue Nov 10, 2015 10:29 pm

Re: Mop up chemo experiences

Postby Soccermom2boys » Tue Sep 04, 2018 7:25 pm

Caat55 wrote: I told my husband it felt like a had a leave or something in my shoes. I also avoid being barefoot now.


To this day, over two years out from my last treatment, when I have socks on with my sneakers, it always feels like the socks are all bunched up on the bottom, under the soles of my feet (even though I know the socks are not, it totally feels just like that, and I always check to make sure because I want it to just be the socks and not because my feet are defective now). I also avoided being barefoot for a long long time after treatment ended and now I will do some barefoot around the house if the cold floors don’t bother me, but I won’t do barefoot outdoors unless at the beach or pool where I have to walk just a little to get to the water. However, I would actually recommend you start exposing your feet to more stimuli—this was advice from Miss Molly to someone else a while back and unfortunately when I read her post I was well over a year out from finishing my chemo so the neuropathy was too far gone to ever fully fade away for me. But after reading her post I made more of an effort to have my feet feel “uncomfortable” with walking barefoot here in the house where I could and walking barefoot on sand, and I bought a homemedics foot massager this past winter and try to use it daily. It’s that kind of “hurt” that feels good in a weird way. I still have lingering neuropathy in my feet and I assume at this point I always will, but at least on a bad day it is only a “2” on the pain scale (actually only bothers me at night in bed when I lay down and stretch out my legs/feet or when first putting on socks and sneakers to run). I obviously can’t say for sure now, but I think had I started using that foot massager by six months after finishing chemo when my neuropathy was so painful, I could possibly have much less long term issues with uncomfortable feet now. So while it may sound counterintuitive, try to expose those nerve endings to stimuli now so that you can possibly regenerate the proper feelings. Miss Molly is the best, she knows her medical stuff! :D
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox


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